Wednesday, April 29, 2009

Happenings

Connor's doing fine today-- he's back to his usual happy self, and spent a lot of time giggling and asking me to play peek-a-boo, so I guess he's feeling pretty chipper. We've got a neuro appointment set up for next week, and hopefully they'll be able to help us out, as I'm not thrilled about the recent seizure excitement.

We had two other appointments today-- in urology and nutrition. We'd gone in to the urology department for something fairly minor, but the urologist looked up Connor's medical history, saw he had only one kidney and a recent UTI, and completely freaked out. There was much arm waving and gnashing of teeth and wondering why the other doctors didn't get us an appointment the second they found out Connor had a UTI instead of letting us make one through the slow hospital system. We now have a call in for an appointment to do a renal ultrasound, in which they will check and see if there's any scarring or swelling or weird looking stuff on Connor's remaining kidney, and depending on how that goes other tests may be scheduled. Apparently having a UTI as a three year old with one kidney is rather more serious than I thought.

We walked to our nutrition appointment directly from the urology department. Our nutritionist decided to keep Connor on his current diet, though he's not gaining weight as fast as she'd like. He was putting on the pounds at the snail's pace of 5 grams a day, and now with the g-tube he's been promoted to sloth status at 8 grams a day. This might have been affected by the fact that for the first two weeks or so after the g-tube placement he didn't want to eat anything by mouth, so while he was still taking in calories, it wasn't quite the number of calories he would have been getting had he been eating and also getting food through the tube. Oh well. We'll go in for another weight check in a couple of weeks, and maybe we'll be booking it at a more respectable turtle pace by then.

Connor has a behavioral hearing test (probably a BOA) scheduled for tomorrow. I do not have high hopes for this test, as the last time they tried to test his hearing without using the ABR method he responded as profoundly deaf, when in fact he has a mild-moderate loss. We'll see how it goes-- maybe he'll play along this time. After his test we'll be headed over to Connor's new school district to drop off some paperwork, and then it's back to shuttling loads of our stuff over to the new apartment.

We heard back from the hospital about Connor's g-tube, which has to last us another month and has begun splitting at the intake end. They told us to duct tape it. This will go nicely with the Frankenstein-stitched other end.

About The Author

I'm Connor's Mom. That pretty much explains everything. I mean, raising the epicenter of cuteness in the universe is tough, but it has its moments, all right.
I should probably mention that Connor has a submicroscopic, subtelomeric unbalanced translocation 46xy der t(1)(1;15)(q42;q26.2)-- an extremely rare chromosomal disorder. He keeps me on my toes!